Highest ever numbers of BAME organ donors and recipients

LIFE SAVING: Michael Willis, 61, received a lifesaving double transplant in 2017

MORE BLACK, Asian and minority ethnic (BAME) people are giving the gift of life through organ donation and receiving life saving transplants than ever before, but too many donation opportunities are being missed because families are not discussing the subject and making their decisions clear.

New figures from NHS Blood and Transplant reveal that 121 people from these ethnic backgrounds donated their organs after they died last year, the highest number to date. This figure has increased by 51 percent in the last five years.

And 969 BAME patients received an organ from a deceased donor last year, accounting for a quarter of all deceased donor transplants.

But there is still a stark imbalance between the numbers of BAME donors and those patients in need of a lifesaving transplant. People from these communities represented eight percent of all deceased donors last year compared with 31 percent of those on the transplant waiting list.

Although consent rates have risen, with 42 percent saying yes to organ donation when asked in hospitals, still only around half as many BAME families support donation compared with families from a white background.

Not knowing if their relative wanted to be an organ donor is one of the most common reasons for refusal, leading to 130 BAME families to say no to donation over the last five years.

The figures are revealed in NHS Blood and Transplant annual report into organ donation and transplantation in BAME communities for 2018/2019.

Millie Banerjee, Chairman of NHS Blood and Transplant, said: “Although the steady rise in donors and transplant recipients from BAME communities is positive progress, the shortage of organs for transplant remains critical.

“For every person from a BAME background who gave the gift of an organ last year, there were 15 in need of a transplant to save or drastically improve their lives. Tragically, many will die waiting.

“We know that families who haven’t discussed organ donation often decide it’s safer to say no when faced with the possibility of donating a relative’s organs. Not having the conversation means opportunities for lifesaving transplants are being lost.

“To save and improve the lives of more people from BAME backgrounds, we urgently need people to decide they want to be a lifesaving organ donor and share that decision with their families.”

Another reason commonly given by BAME families for declining to donate a relative’s organs is the belief that it is against their religion or culture.

However, all the major religions support organ donation and transplantation in principle, and a great deal of work is being done within faith communities to break down the myths and perceived barriers to donation.

Michael Willis, 61, received a lifesaving double transplant in 2017 after being diagnosed with sarcoidosis, a rare lung condition that causes patches of red and swollen tissue to develop in the organs of the body.

The jewellery maker from Wednesbury said: “I was told I had six months to live and my last option was a lung transplant. I had researched organ donation and it’s then that I realise how much of a shortage there is of black and Asian donors. I was devastated and thought this was going to be the end.

“I am and always will be forever grateful to the person and their family making the decision to donate their lungs.”

There were 1,883 BAME patients on the transplant waiting list in March 2019. Although this figure is four percent smaller than in 2014/15, these communities still make up almost a third of those waiting for a lifesaving transplant.

The new figures show that patients from these backgrounds continue to wait longer for an organ. Just 19 percent of BAME patients have received a transplant one year after being listed for a kidney, the most commonly transplanted organ, compared with 31 percent of white patients.

Kirit Modi, Honorary President of the National BAME Transplant Alliance (NBTA), said: “The 2018/19 report is reassuring because it shows a small increase in the number of BAME organ donors.

“The introduction of opt out in England and Scotland in 2020 provides a unique opportunity for BAME communities, NBTA and NHS Blood and Transplant to work in partnership to explain this important change and I hope that this will result in greater increases in the number of organ donors from BAME backgrounds in the future.”